After months of waiting for a new heart for her ‘little prince’, Ashley Hardy had given up hope he would ever be given the lifesaving gift.
Benjamin was born in August last year with just half a heart, and has been fighting just to stay alive ever since.
Doctors said he had just a 30 per cent chance of making it when he was diagnosed with Hypoplastic Left Heart Syndrome while Ashley - from Orton Goldhay - was still pregnant.
He needed a heart transplant - but because of his condition, his requirements were very specific - and as the wait for a suitable donor turned from days to weeks, and weeks to months, hopes a suitable donor would be found in time diminished.
But, despite the slim odds of survival Benjamin, his family, and doctors at Newcastle’s Freeman Hospital continued to fight for his life while he was hundreds of miles from home - and a few weeks ago he was given the ‘gift from an angel’ - a heart transplant.
Ashley (32), said: “The wait (for the heart) felt like it was never ending - and you couldn’t guarantee he was ever going to get one.
“Its not like you can go to the shop and pick up one like a box of cereal.
“Every day you sit there thinking ‘is today going to be the day - if not am I going to lose my son today.’ I wouldn’t wish it on anyone.
“I had given up hope we would get one.”
But a few weeks ago Ashley received the call that a heart was available at 3am - and Benjamin was taken to surgery just an hour later.
When the heart became available, she was waiting to see if he was suitable for another procedure, called a Glenn Shunt.
Despite the good news for Benjamin, some of Ashley’s first thoughts were with the family of the child whose heart would be transplanted.
She didn’t reveal exactly when the transplant was made out of respect for the privacy of the family.
She said: “I was with Ben’s favourite nurse, and I just burst into tears with her.
"My first thoughts were with that family - they have just saved my son .
“I was happy for Benjamin, but it was really mixed emotions, because you are grieving for that family as well.
“They have no idea what they have done for h i m . T h e y have no idea how much it means. They saved him. They saved a life.
“I rang his dad - when I told him, he cried on the phone.
“He asked if Benjamin could have the Glenn and I told him it’s better than that.
“We both paused and he cried - we knew what it meant without having to say anything else.”
Dad Davy Rayner raced up to Newcastle to be with his son, who was in surgery for more than eight hours while the transplant took place.
Benjamin’s parents were unable to see him properly for a number of hours after the operation, to prevent infection.
Ashley said: “I didn’t sleep,I didn’t eat - the w a i t ( w h i l e he was in surgery) felt like months, weeks, days, constantly checking my phone, ringing people up to see if he had
“When I heard it was a success, I wanted to cry - I just wanted to be with him.
“When I saw him he had machines going - but he was pink, rather than blue.
“When he held my finger, I could see his hands were pink, when before they were blue. Now he is pink all over.”
The transplant is the last scheduled major operation Benjamin will need,and plans are being put in place to take him home for the first time - although Ashley said the transplant was not a cure. She said: “ A new heart is not a cure - he may need to go on the transplant list again in the future, but he might not - this heart could last 30-40 years.
“But we have been told he won’t out live us - he will go before us, because it is not a permanent thing.
“We’ve now had pre-discharge meetings there is a lot of training to do - without drugs his heart could fail - we need to make sure we are on top of that.
“We have to get his diet sorted. He is behind, physically, with his dieting, with speech - he should be saying words now - but he has spent most of his life on his back.”
The ten months Benjamin has been in Newcastle has also put a strain on the rest of the family, with Ashley and Davy having to spend long periods away from Benjamin’s sisters,
Sharlene (8) and Jessica (5).
Ashley said: “I went home shortly after the transplant, but when I came back up my five-year-old said ‘bye mum’ but my nine-year-old was sobbing, and said ‘please don’t go, I don’t want this anymore, I don’t know why it has to be this way.
“We didn’t tell them he had the transplant straight away, but we have now told them he has had the gift from an angel.”
While Ashley is not yet in touch with the donor family, she said she would be writing to them in the future.
She said: “I always said from day one, especially when he was deteriorating, whoever can save my son, whoever makes that massive decision, they will always be his second mummy and daddy.
“About a year down the line I’ll write a letter to them.
“Benjamin did die in my arms - I know what that feeling is like. I know the grieving they were going through.
“I love them. I’ve never even met them but I love them.
“It is up to them, if one day they want to meet, it could be a year, two years, 10 years whatever - I love them so much.”
The Peterborough Telegraph reported on his plight at Christmas, and the desperate need for the transplant, and messages came to his family from around the world offering support.
Ashley said: “We have had so many messages, I have not yet been able to read them all. We have had hundreds.
“When he had the transplant, I asked people to light a candle for the donor’s family."